I was 9 years old when I first started having symptoms — stomach pain, mostly. Originally I was diagnosed with irritable bowel syndrome (IBS) and was on maintenance meds for that for a while. Then, when I was 16, I was officially diagnosed with Crohn's disease. My symptoms got worse, and I had more stomach pain and inflammation, especially in my colon. They put me on biologic drugs, by infusion, and that kept it at bay for a few years.
But when I went to college, things took a turn. I think the stress made the stomach pain worse, and I went back and forth between constipation and diarrhea all the time. I was also really tired. My doctors told me that my exhaustion was at least partly due to my colon not absorbing nutrients like it should.
When I was in high school, I didn't really want people to know that I had Crohn's, because it was hard for me to explain what it was. When I dated guys, I didn't want to tell them, either, and if I had to get an infusion or go to a doctor's appointment, I would just kind of brush it off, like, "Oh, it's just a check-up. I have some stomach issues."
But once I got my ostomy, in my mid-20s, I became more vocal. The reason people feel weird talking about Crohn's is because so many people are uneducated about what the disease is. I even had trouble telling my close high school friends, because I felt like, "Well, nobody else has these health issues going on." I tried to find information on YouTube, for example, but at the time, there just wasn't that much out there, and we definitely didn't have as many advocates as we do now. I had my parents, of course, and they were always super supportive. But I just wanted to keep it hush-hush at first.
When I was around 25, my Crohn's got a lot worse, and I moved back home to live with my parents. The infusions were no longer working, and I was losing a lot of blood, spending more time in the hospital and more time in pain. I had just gotten a job, but I would wake up at 5 a.m., eat a small breakfast, and then spend an hour in the bathroom. Long story short, one day I passed out in my kitchen. My dad came and picked me up and took me to the bathroom, but I kept shaking, like I was having a seizure. Eventually, I was hospitalized for 52 days, and while there I would take two steps forward and two steps back. I would get a blood transfusion, but then I would lose so much blood that my hemoglobin wasn't going back up.
That summer, my gastroenterologist was going out of town, and he introduced me to a colorectal surgeon. I freaked out, but he said, "I just want you to have a relationship with a surgeon while I'm out of town, in case there is an emergency, because the lining of your colon is thinning." That was the scariest moment in my life. Although I love him today, meeting the surgeon, Dr. Russ, was terrifying.
He was very matter of fact. I asked what kind of surgery he might have to do, and when he told me he would remove my colon and I'd have an ostomy bag, I just figured, OK, my life is over. Nothing will ever be the same. No one's ever going to want to date me! The silly things that go through your mind — but I was just so afraid.
So Dr. Russ kept checking on me, and I thank God that he didn't give up on me. In July 2016, I got a bad C. diff infection, and I had to go into isolation. That was traumatic, because even my parents had to gown up and put on gloves. I felt like nobody could touch me or be around me, and it was such a lonely feeling. So I turned to prayer. I'm a person of faith, a Christian, and I prayed, and that comforted me. I had a lot of people in my corner: my parents, of course, and one of my best friends who gowned up and held my hand, and they prayed with me.
Finally, at the end of July, my surgeon came back and said, ‘Look, Amber, you've got 48 hours. The lining of your colon is getting very thin, and your white count is dropping. If we don't get this colon out, you could die." And within 24 hours I told my mom, "Go get the surgeon. I want to have the surgery." I just felt like that's what God wanted me to do. I had a sense of peace about it. I had the surgery, and my nurses were wonderful, my friends were wonderful, and it was the best decision of my life. My health immediately started to turn around.
I think that sometimes when something bad happens to you, it happens for a reason: The friendships that I've made with people at the medical center and in the Crohn's advocacy community, learning about people like Eric from VeganOstomy, meeting my amazing friend Mallory, and even the fact that it ultimately led to meeting my fiancé. We go through bad times and learn from them, and that way we can help teach other people — like how my friend Mallory taught me about taking care of myself, and that everything would be all right in the end. I think that Crohn's has brought way more positive things to my life than negative.
My biggest piece of advice for anybody with a chronic illness is to be patient with yourself and be honest with the people around you. Try not to get frustrated in the moment. Give yourself time to adapt and learn. If you get too overwhelmed, then you're going to miss what you're supposed to learn from it. So be patient. There's a light at the end of the tunnel.